I need info on getting my large intestines and colon removed

Hi, Im 24 years old and for years I have had issues with my bowel movements. basically I rarely have any. I can go for weeks and not have one. My large intestines and colon just do not function, no motility and no fluid secretion. I think its called colon inertia.But this has caused me to become so backed up that my stomach is filled with rock hard stool that I cannot pass. it becomes rock hard because the intestines doesnt secrete any of the mucus to soften the stool and keep it moving. Ive had to go under general anesthesia many times to be manually disempacted. Its quite embarrassing but not something i have any control over. From doing this for years my colon has become so stretched out and damaged, its inflamed larger than it should be, alot of scar tissue built up too. My only option now is that they are going to remove my large intestines and colon and maybe even part of the rectum (because there is muscle damage) and then have my small intestines reconnected to the rectum and also a j pouch formed. I will most likely have a bag until it heals, then have the surgery to get rid of the bag. Im writing on here because Im absolutely TERRIFIED. Im only 24 yrs old and he says if i dont have this surgery that if my muscle get any more stretched i will have no control over my bowels. thats a scary thought. But this surgery is scaring the living daylights out of me. Im looking for anyone who has had this operation to give me some advice as to what to expect. did it help you? was it worth it? any complications? All i keep thinking is what if it doesnt work or causes more issues? God gave you those organs for a reason and its not like once they take it out, they can put them back in if need be. being so young im scared of having the bag, i know it should just be temporary but im nervous that with my luck something will happen and it will become permanent. Its so embarrassing, I dont want to let any of my friends know. my family are the only ones who know. I am worried about how often I will have to use the bathroom after, im nervous about the pain. how bad is the pain? i'll be in the hospital for about a week and in recovery at home for 2 or 3 months. Ive become so depressed and anxious about this. I really need some help and kind words and I need to hear from someone with experience what life is going to be like while recovering from the surgery and what life is going to be like after i heal. Please any help, I would be so appreciative. because Im a nervous wreck about this., I am scheduled for it in about a week. Please help me.

[mammo]

Hi, my son had to have his colon removed at 12 and has a J-Pouch.  Today he is a very healthy 39 year old, who is a marathoner, ultrathoner, mountain biker, competes in jujitsu and an avid hiker.  He just completed the John Muir Trail today.  He had exactly what you are having done.  They waited 3 months to reconnect him and remove his bag.  At first there were a lot of watery BM's, but with time and medication this slowed down a lot.  He learned what foods made it worse and avoids them.  The many BM's will be your biggest complaint, just pay attention to what makes them worse, everyone is different and what may affect one adversely may not another, so you have to taylor your diet to your needs.  You will have to be more careful when exercising in the heat as you are more easily dehydrated, but with drinking plenty of water, and Gatorade to replenish electrolytes, you'll be fine.  Then during flu season a stomach virus will hit you harder than the average person, so if you're ever sick and going from both ends, make a trip to the ER for some IV hydration and you'll be fine.  My son has to do this at least once a year.  He is very physical and pushes his body to it's limits, and refuses to allow not having a colon stop him from living his life to the fullest.  So, please know that you too will have a normal life, and things will be just fine for you.  My son had his surgery 27 years ago, imagine how much they have improved on it!!!  It's truly not as bad as it sounds.  After they reconnect you nobody will know that you are any different than them.  My son was out of the hospital in 7 days, and running around being a normal kid within a few weeks.  The time line they're giving you is for you to heal inside so that they can reconnect you, but you'll feel pretty good long before then.  Your quality of life will be so much better than it has been thus far.  You've probably endured more pain from what you've been through with the constipation.  Yes, God gave us these organs for a reason but he also gave us doctors to help when these organs fail.  Look forward to a better life and try to relax.  It will all be over before you know it, and you will be able to live a normal life and do anything any other woman can do.  Take care.

[Renee920]

i read some places that it can cause sexual dysfunction. is that true? how so?

[CalGal]

Renee, try posting to Morecambe or reading some of Morecambe's posts. Although the operation he had is a bit different from the one that you're describing, he's got some very sound advice on the subject of having the whole of the large intestine removed and some great dietary advice.

[mammo]

Hi, my son had to have his colon removed at 12 and has a J-Pouch.  Today he is a very healthy 39 year old, who is a marathoner, ultrathoner, mountain biker, competes in jujitsu and an avid hiker.  He just completed the John Muir Trail today.  He had exactly what you are having done.  They waited 3 months to reconnect him and remove his bag.  At first there were a lot of watery BM's, but with time and medication this slowed down a lot.  He learned what foods made it worse and avoids them.  The many BM's will be your biggest complaint, just pay attention to what makes them worse, everyone is different and what may affect one adversely may not another, so you have to taylor your diet to your needs.  You will have to be more careful when exercising in the heat as you are more easily dehydrated, but with drinking plenty of water, and Gatorade to replenish electrolytes, you'll be fine.  Then during flu season a stomach virus will hit you harder than the average person, so if you're ever sick and going from both ends, make a trip to the ER for some IV hydration and you'll be fine.  My son has to do this at least once a year.  He is very physical and pushes his body to it's limits, and refuses to allow not having a colon stop him from living his life to the fullest.  So, please know that you too will have a normal life, and things will be just fine for you.  My son had his surgery 27 years ago, imagine how much they have improved on it!!!  It's truly not as bad as it sounds.  After they reconnect you nobody will know that you are any different than them.  My son was out of the hospital in 7 days, and running around being a normal kid within a few weeks.  The time line they're giving you is for you to heal inside so that they can reconnect you, but you'll feel pretty good long before then.  Your quality of life will be so much better than it has been thus far.  You've probably endured more pain from what you've been through with the constipation.  Yes, God gave us these organs for a reason but he also gave us doctors to help when these organs fail.  Look forward to a better life and try to relax.  It will all be over before you know it, and you will be able to live a normal life and do anything any other woman can do.  Take care.

[Renee920]

Thank you so much for sharing that with me. believe it or not it helped alot. gave me some  hope :) im still nervous but hearing how he is doing now is really reassuring. thanks for taking the time to answer my post !!

[mammo]

You're very welcome. Anyone would be nervous, but knowing that your life will be better I hope helps.  My son even aced all the physical and written tests to become a Marine. They wouldn't take him because he didn't have a colon, so I wrote to President Reagan along with letters from his surgeons stating that he was capable of serving in the military. I received a letter from the Secretary of Defense and they still refused to take him.  I tell you all this because I really feel after watching him all these years, a lot is mind over matter.  It's all in your attitude about life.  You've already been thru a lot, that would scare me!! Please feel free to write any time, and try to let me know how you are doing......okay? I'll be thinking of you!

[Morecambe]

Hi - the posting that Calgal referred to can be found on:-

http://www.medhelp.org/posts/show/523166

Please feel free to come back with any questions that you may have.  

regards
Morecambe

[Renee920]

Well your son is lucky to have you with all that youve tried to help him with. I do agree with the mind over matter theory. Ive had a bad attitude about it since the moment i found out.. I was a little dramatic about it thinking "my life was over" or at least it will be for the time spent recovering after the surgery. See im 24 and ive lived in my own apartment since i was 18, my lease is up in october and im scheduled to have this surgery wthin the week so I wont be working, wont be able to pay for my apartment,and also because Im going to need someone to help me with the surgery I am in the middle of moving out of my apartment and back home to my parents house, into my old room even. Ive been packing and its just been so depressing to me, I have to give up my independence in a way, everything ive worked 45+ hrs a week to keep (my apt and bills etc) and have to go live with my parents. Dont get me wrong i love my parents but what 24 yr old wants to give up their own place and freedom to go live with their parents.......ontop of all that, the timing of the surgery just *****. Ill be in the hospital for my birthday, my brothers birthday and my best friends birthday. I had trip planned to go to NY to see my whole huge family and all my closest friends (im from new york, grew up there) and now i cant do any of it. I  just feel like im going to be isolated from everyone Im not going to want anyone to come visit me if i have to have a bag. ok im know im blabbing on and on complaining, im sorry haha i was just saying i know what you mean about mind over matter, you start thinking all these negative things it makes it worse. your first blog post really truly helped me tho. I copy and pasted that same first entry asking for advice to at least 10 different websites and your answer was the one that made me a little hopeful and a little less scared! and your right, if it takes away the constant chronic constipation ive been dealing with for years, its worth it. its caused me so much pain and THAT in itself has cost me a good quality of life, so my fingers are crossed with this, that it is the answer and all will be good after! Im going to save this blog on my computer and after all is said and done ill let u know how things went..and i might have some questions for you here and there haha. thanks again.
~ <3  Renee  <3 ~                                        

[Renee920]

Thank you so much for the link! Im going to check it out right now
I appreciate it
thanks
~Renee~

[mammo]

I totally understand where you're coming from with this big interruption in your life, it truly *****!  But try to look at it as just a bump in the road to better things, a better life.  I hate to see you not sharing this with your friends, they would be so caring and understanding.  They won't be able to see your bag, and it would keep you from being isolated.  The bag won't hold you back from doing things (just swimming), you just may have to make frequent stops in the restroom to empty it, but other than that, you'll be able to do anything you like.  My grandson had two, a colostomy and ileostomy, and they never slowed him down.  He had them for a year after a 5 organ transplant, from age 17 to 18. I applaude your independence, and you will be there again real soon, and it will all be worth it.  You have suffered an awful lot, this will pale in comparison.  As I said my son with the J-Pouch is a speed hiker, and he just completed the John Muir Trail averaging 43 miles a day!  It's truly attitude, and I sense that you are a very strong and independent woman who will not let this slow you down.  You can write and ramble all you want!  If you get bored during recovery, please feel free to write to me as well. Think about letting your friends know, my kids friends all knew and they were so sweet and kind.  You have NOTHING to be embarrassed about.  Take care...